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P-HealthX > Blog > Women's Health > Finding Silver Linings Through My Work as a Health Advocate Has Helped Me Live with MS for 38 Years
Women's Health

Finding Silver Linings Through My Work as a Health Advocate Has Helped Me Live with MS for 38 Years

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Last updated: 2024/04/30 at 1:43 AM
By admin 5 Min Read
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As told to Nicole Audrey Spector

A few weeks after graduating from college, I was in a severe car accident that left me with a concussion and a gaping wound requiring 16 stitches. Although I have no memory of the accident itself, I vividly recall the strange sensation that plagued me in the aftermath – my feet were numb.

Upon visiting our family doctor, I was informed that the tight shoes I had been wearing were the cause of my foot numbness. In hindsight, it sounds trivial, but at the time, I accepted the explanation without question. Denial is a powerful defense mechanism, especially for a 21-year-old who is in the process of building the life of her dreams.

Fast forward five years, as I walked to the bus station after work one day, I suddenly realized my feet felt peculiar – completely numb, yet still able to sense the ground beneath them. To my astonishment, I looked down and discovered I was barefoot, as my high heels had slipped off unnoticed. This discovery, coupled with overwhelming weakness and fatigue, signaled that something was seriously wrong.

A visit to a neurologist in 1986, where only spinal taps and CT scans were available for diagnosis, revealed a troubling reality – I was advised to quit my job and move back in with my parents, although no definitive diagnosis was given at that time. It was my mother who had to break the devastating news to me that I had multiple sclerosis (MS). This unfamiliar diagnosis left me emotionally shattered, but I felt compelled to stay resilient for my mother’s sake.

Despite the uncertainty that loomed over me, I took on the challenge of learning everything I could about MS, viewing it as an opportunity for growth rather than a hindrance. I immersed myself in knowledge, reaching out to national MS organizations and devouring every piece of literature available.

Attending a local MS care center proved to be a turning point in my journey. One insightful nurse practitioner’s words uplifted me, urging me not to let MS define my identity. This inspired me to delve into MS advocacy work and support groups, bridging the gap between patients and experts to explore novel ideas and solutions.

Enduring the archaic treatment methods of the time, including steroid injections and stringent restrictions on physical activity, I relied on the unwavering support of my family and future husband to navigate the challenges imposed by MS. Their love and encouragement propelled me towards a path of service and empathy, driven by the belief that no one should face MS alone.

From leading support groups to advocating for inclusivity and exploring complementary treatments, my journey with MS has been an evolution of resilience and empowerment. Embracing the advancements in MS research and treatment, I stand as a beacon of hope and unity within the global MS community.

While MS continues to present its challenges, I face each day with renewed determination and gratitude. With unwavering support from my husband and the community, I navigate the complexities of MS with grace and strength, knowing that together, we can overcome any obstacle.

Resources

MS Support Group Finder

This educational resource was created with support from Novartis.

Have a Real Women, Real Stories of your own you want to share? Let us know.

Our Real Women, Real Stories are the authentic experiences of real-life women. The views, opinions, and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.

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